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⚠️ This Blog is a space for honest conversations about my personal experiences with MS, mental health, and the weird paranormal, liminal, and everything in between. I’m not a doctor, therapist, or expert in the unexplained; I’m just someone sharing my story and offering solidarity. If you’re struggling, please reach out to a trusted friend, support group, or professional. And if the weird stuff sparks your curiosity, remember: stay open-minded, but always prioritise your well-being.⚠️
please remember I suffer with severe cognitive dysfunction, and use AI to proof read and help solve this issue so you can understand it
Sunday morning. Rain hammering down. The sort of day that makes you want to pull the curtains, swear at the weather and pretend civilisation has been cancelled.
Instead, I had a two-hour round trip to the hospital for an MRI.
Luxury.
White coat syndrome had already arrived the night before, naturally. It does not knock politely. It climbs into bed with you, starts rattling your nervous system and whispers, “Remember tomorrow? Let’s make that worse.”
Just as I was trying to sleep, my throat began spasming. Every few minutes. For about an hour. Nothing says restful bedtime quite like feeling your body has decided to audition for a low-budget horror film.
Eventually I took a Lorazepam because the brain was doing its usual hamster-on-a-wheel routine. Still woke up around four or five in the morning, in pain, with the day ahead already stomping about in my head wearing steel-capped boots.
Then, because life enjoys an encore, we found the van had a puncture.
Of course it did.
Pump up the tyre, get in the van, head into the city in Sunday rain. I had hoped to see the grandchildren afterwards, but they all had colds, so that plan got knocked firmly on the head. Probably for the best. Passing germs around is not really the family pastime anyone needs.
Travelling with MS is not simply “getting in a car.” It is an expedition. Even when you are not driving, it drains you. When you are driving, and cannot take your usual medication because you need to be safe behind the wheel, it becomes a special kind of rubbish.
From roughly seven in the morning until about three in the afternoon: medication-free. Brilliant. My nervous system was no doubt thrilled.
There have been plenty of times I have thought about handing in my licence. Saying enough is enough. But at the moment, I cannot. So I carry on. That is often the reality of disability: not heroic nonsense, not inspirational poster material — just doing the difficult thing because the alternatives are worse.
White coat syndrome did not appear from thin air
Mine goes back decades.
As a kid in the 1960s, I was taken to a dentist who seemed to have been built in the Victorian era and left in storage since 1700. Cobwebs, grim mood, no patience, and drills that looked like they belonged on a building site.
You did not get soothing words. You got pushed through the door, sat in the chair and told to shut up. My mother did not understand the terror, and neither did the dentist. That feeling sticks with you. Your body remembers even when your brain thinks it has moved on.
Oddly, MS has removed my dentist anxiety now, partly because my mouth is numb and fillings often do not hurt. Every cloud and all that.
The downside is biting chunks out of your tongue, dribbling when drinking and trying to eat with a mouth that has the sensitivity of an old sofa cushion. It is not glamorous. MS rarely is.
The MRI experience:
surprisingly decent staff, deeply unpleasant tube
The journey in was not too bad until we hit the city. Then it became chock-a-block, because apparently everyone else had chosen the same rainy Sunday to clog up the roads.
I took a wrong turn, got confused and added another twenty minutes. We arrived about half an hour early, and — shockingly — I was seen fifteen minutes early. The staff were kind and seemed to know what they were doing.
On the form, I wrote: “I have white coat syndrome.”
They asked what it was.
I laughed.
I also explained that confined spaces are not my idea of a good time. They gave me that familiar look: half reassurance, half “we have heard this before.” Then came the MRI.
About halfway through, I started feeling sick. My nerves were spasming all over. The face mask was making my breathing feel worse, and with the throat-strangling sensation I already get, being strapped into a metal machine with my head held in place was not exactly a spa afternoon.
They stopped the scan briefly and took the mask off. Thank God for that.
I was in there for somewhere between half an hour and three quarters of an hour. Not the worst thing I have ever endured, but nobody should pretend it is pleasant when your body is already on high alert.
People sometimes wonder why medical appointments can knock someone with MS sideways for days.
There it is.
The travel. The disrupted medication. The pain. The anxiety. The sensory overload. The waiting. The physical effort. The fear. The concentration. The fact that you have to keep performing “coping” while your body is quietly filing a formal complaint.
And then people say, “But it was only an appointment.”
Yes. Only an appointment. Like climbing Everest is only a walk.
Home, exhausted, and waiting
The trip home was fairly pleasant apart from the usual road warriors in their giant fast cars, overtaking because apparently arriving thirty seconds sooner is a sacred mission.
I got home less stressed, absolutely shattered, and ready to take my medication, eat dinner and collapse into bed.
I am glad hospitals are able to offer MRI appointments on a Sunday. Honestly, more services should be available around the clock. Illness does not close for weekends, bank holidays or staff rota convenience. Bodies have appalling manners like that.
I do not know what the MRI will show. I know how I feel, I know I have been getting worse, and I know I have spent years telling people what has been happening to me. The wait for answers is its own kind of torture.
For years, I was left trying to make sense of symptoms that were written off, missed or simply unexplained. The MS hug. The pain. The breathing and throat symptoms. The sheer madness of trying to explain what is happening inside a body that no longer follows the rules.
Too often, people with MS are sent off to navigate a minefield with a leaflet and a polite smile.
That is not good enough.
Anyway. MRI done. Rain survived. Tyre pumped up. Nervous system thoroughly offended.
Now for a long afternoon in bed, medication, food and the hope that tomorrow is less of a circus.
Peace, healing, love and light to everyone still battling their own ridiculous body, their own hospital maze, or their own Sunday from hell.
Keep your stress down where you can. Smile if you feel like it.
And stay safe, stay well.
Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)
